Gradient and symptoms

[Abbygirl2]

Morning,

Question...
Does a higher gradient mean worse symptoms?

If so then those without obstruction, therefore no gradient, would not have certain symptoms-those which coincide with a high gradient. Am I lost again? Any clarification would help.

Many thanks
Pam

[Reenie]

A higher gradient does usually indicate worse symptoms, but symptoms are flakey. They can strike anyone regardless of obstruction. However, the feeling of fullness in the throat and a few other symptoms may be felt almost exclusively by those who are obstructed - when the obstruction itself creates the symptom. Did I cloud the water more or help?

Reenie

[Burton Borrok]

Hello again Canadian Pam,
(I hope you don’t mind my kidding around like this.)

As I’ve been able to observe and also hear from others, HCM itself and the symptoms felt by the sufferer are almost two unassociated issues.

There are in fact certain symptoms usually associated with certain HCM conditions, but it is a loose association at best. Some people have significant deviations from what would be called normal but suffer almost no symptoms while others who have only slight variations from the norm suffer significant symptoms.

Quite frankly, I do not know which situation is more significant - the one with the greatest deviation or the one with the worst symptoms. I only know it’s an individual situation with each sufferer. This explanation doesn’t help much does it? Well, it’s a funky kind of disease. It’s like asking why some families have multiple members suffer instant death while other families with as many sufferers have no incidents of instant death. At least for now, only the good Lord knows.
Burt

[Pam Alexson]

Pam,

I always thought that my worst symptoms were from the very large gradient I had. Some were , it was like a locomotive running in my chest with any activity even at rest sometimes and it was very painfull at times.

Now 16 months out of surgery many disturbing symptoms are back. The locomotive is not back and I am told that my once very loud murmur is very soft. The chest pain is worse then before and more frequent. The SOB is with most activities and the sweating and poor endurance and exercise intolerance is not much different. I am having mobility problems again , presyncope episodes with activity and when tired, etc . etc

I am told that now without obstruction they the specialists are able to see just what symptoms I have and experience . MY heart is different in that respect and they have different options as with meds that did not help before that they can try now. I have been back up on the Atenolol for 5 months at 250mgs a day. Prior to surgury I took 300mgs. Now the increase helped a bit for awhile but only for 2 months. I go next week and will try to see what can be done next.

So as Burton states HCM evokes a differebt picture with each person and different symptoms. A side note: My original cardiologist wrote in my chart( I just recently saw it) that he did not feel that a myectomy would result in a reversal of limiting symptoms for me and that he felt the stiffness of my heart was the biggest contributing factor in severe symptoms. I find this piece of info that either I overloked or decided to ignore very intriguing now.

Pam

[mtlieb]

Re: Gradient and symptoms

Does a higher gradient mean worse symptoms?

Pam,

As Reenie stated, the answer to that question is usually a 'yes', but not always.

Having a high gradient (obstruction) places an additional burden on the heart which may result in worse or different symptoms than the average HCM patient. For example... the pain in the neck often felt by obstructed HCM'ers. Don't be discouraged by this fact however. Those of us with obstruction actually have it a bit better than most because there are more options available to us for the treatment of symptoms (i.e. myectomy or ablation). I have chatted with HCM'ers who wish they could say their symptoms are the result of obstruction, because then they would have more treatment options available to them. In the end though, as Pam stated, we all still have HCM and surgery only relieves those symptoms that are related directly to the obstruction.

In a side note, it's oddly enough the case that most HCM'ers i've come across with obstruction, do not normally have extremely large septums. It's usually us 'thinner-septum' folks that have that problem. I don't know why that is or if anybody has the answer as to why that occurs.

Take care,

Jim

[Abbygirl2]

Thanks for the replies,

My septum is only slightly thickened, but still I am obstructed. Must be 'where' the septum is enlarged. My gradient isn't near as high as others I have seen on here, even with provocation. Yet the symptoms have kept me down and out for way too long.
I have been told twice that I am not a myectomy candidate, so I feel like I have hit a road block.
Nothing about HCM makes sense....

Pam

[vmcmahon]

Hi

what symptoms do most people who are not obstructed experiance..?

thnx.. Vinnie

[Toogoofy317]

I am non-obstructed and I experience chest pain, shortness of breath, fatigue, pain that radiates down the arm, shoulder pain and fatigue.

These symptoms have sent me on many a hospital stays.

Mary S.

[progers]

Hi Pam,

I am very curious to know why your original cardiologist felt that surgery (a myectomy right?) would not result in a reversal of limiting symptoms for you and that the stiffness of your was the "biggest contributing factor". Do you think it was just guess work on his/her part?

How could the cardiologist possibly know what is causing the greatest symptoms (i.e. the obstruction or the stiffness of the ventricle?). As far as I am aware, there would be no real way to tell, though if anyone has information to the contrary I would love to hear it

I am due to have a myectomy in 3 weeks and this question has been on my mind. I obviously have diastolic dysfunction - as does everone with HCM. But I also have a high resting gradient, 'severe' SAM and a very enlarged septum. It is assumed that these are the major causes of my symptoms.

Cheers,

Paul

[shirleymahoney]

Her Doctor may well be right because i had the Myectomy and I'm still very symptomatic and theonly thing that could be causing it is the stiffness of both my ventricles bummer huh, and i was told the only thing to help me now is a transplant

Shirley

[progers]

Hi Shirley,

Have the doctors given you any explanation for this? (other than you have stiff ventricles). Was there any warning or hint that surgery might not help (as happened with Pam).

It must be a really scary time for you and I feel for you and your family. But the impression I get from your posts is that you are resilient and will get through this all somehow.

Take care,

Paul

[Pam Alexson]

Hi Paul,

Good question , I am not sure of his theory as I do not see him any more. My mom and brother see him and he does still ask about me and verbalizes his concern. He has angered me a few times as I do believe it is not too professional to speak to other family members about another without permission, but he inquires nonetheless.

When they describe my symptoms he shakes his head and tells them that this is what he felt would happen and he was fit to be tied that I had been even considering a myectomy back then. He was adamant that a myectomy was not for me and stood firm on it. I asked him everytime I saw him about various things that could be done to me to help me and he would just say, no Pam , not for your heart. He said that technology was not there yet for me in particular. He always referred to the stiffness of my heart and it's very poor ability to relax as my biggest problem. My septum was assymetric and not real thick , 15mm -18mm, my SAM was not major and the regurgitation mild. The gradient however was 70+ at rest and 200-240+ with provacation.

He later expressed his remorse to my mom and said he was just not as aware as he should have been of the severity of my frustration with living this way. He begged her to please have me call him and that they could consider an alcohol ablation on me if it worked up that way and if I was still at the end . He always referred to little sayings like that and said I would have to be at the end of my rope before he considered anything interventional.

I grew very frustrated with the poor quality of life I was experiencing and went for a second opinion at another major hospital where there is an HCM clinic. The stiffness was not talked about much here , just that they could help me . After several echo's another cath and 2 TE Echo's, it was determined that my septum was large enough up near the mitral valve to do the myectomy safely to remove the gradient. That big ole gradient caused very severe symptoms .

Now it is clear to decipher what is different about my heart and the symptoms that are a result of the remaining problems , in particular the stiffness. Even at my last visit in Sept. I was told that the difference now can give them a better picture of what options they can try to help relieve the symptoms of a non - obstructed individual who has many ongoing symptoms. As you read here there are many individuals who have pretty bad symptoms and are non- obstructed right? Well for me I am now pretty non obstructed.

When talking about a myectomy VS not as I have stated I am extremely happy I was able to get rid of that gradient, last reading was at 20 I believe. That is a far shot from what it was.

All I can tell you about my prior doctor is that he had been, in his start up days, a part of the original group that was able to replicate the genome of HCM in the laboratory using a rat. He is still head of the echocardiography department at that hospital. When I had my original cardiac cath , he told me that I had what they believed was a very severe variant of HCM and what they often find in elderly women with regards to the stiffness and poor relaxing factor. He said they would be contacting me about genetic testing if I was willing. Remember , my brother has a very mild form with very few symptoms.

Please do not let my situation or anyone elses cause you to second quess your decision. It is obvius you are well versed on the disease and worked out a good plan for you. I personnally would not have changed a thing I did and am glad that one major HCM problem was taken care of. The CHF which was a biggie for me is very easily managed and not in the forefront any more.

Paul I hoped this has helped to explain a bit.

Best wishes and continue to have faith in the plan you and your doctor have for you.

Pam

[Ralph]

gradiant and symptoms

Hi, I had my myectomy last March 18th at Cleveland Clinic and before the surgery my gradient was ranging between 70 and 110. Now, thanks to Dr. Smidera, the gradient is 0. I do not have any chest pains, SOB, or fast pulse. I can feel some very slight PVC's mostly in the evening a few hours before taking my 50mg of Atenolol. I can do thinks now I have not been able to do in years. I hope this can continue. I go to Cardio Rehab twice a week and walk 30 to 60 mins. 3 to 4 days a week. My cardiologist has given me permission to begin sea kayaking again. (He banned me from kayaking 2 years ago.) I am about 15 lbs. lighter than before surgery and that may help also.

Hang in there and try to stay fit.


Ralph

[Linda]

Ralph, Thanks for the update. It's good to hear from you again. I'm glad to hear things are going so well. Will we see you in NJ? Linda

[Ralph]

Linda,

Thanks. I am looking at the schedule and hope I will be able to make it to the meeting.

Ralph